When our daughter was 10, she was diagnosed with coeliac disease - and it turned our world upside down. There was no one to tell us it would be ok, there was no one to help us navigate the immense life changes we were experiencing. We were just given the diagnosis, told to immediately transition to a gluten free diet, and sent on our way.

We were lost in the sea of gluten free labels and “may contain” statements, and we struggled. Over time though, we've adjusted to our new normal. Now we safely share our kitchen between gluten and gluten free foods. We take packed lunches when we go out, we meticulously plan safe places to eat, and research holiday destinations that have safe eateries nearby.

But if we'd had a road map in those early days, the transition to gluten free life would have been so much easier. I often said to my husband in those early days, that I wish there was someone to call, or a service to engage, to help us, to support us. It would have made the transition so much easier. 

Now I've created that service, that connection to support for new families

For parents new to coeliac disease, I have created a book Surviving the first year of childhood coeliac disease, that is filled with everything you could need to know in the first year, as told through our experiences, our wins and losses, and the lessons we learned. I wrote it in the hopes that it would provide comfort and confidence to new parents, that they can make these changes, that they can feel empowered, and that they are not alone in the journey.

For childcare workers, carers, coaches and those who work with and support children, I am in the process of writing a training manual, and creating a resource bundle, that will enable them to care for children with coeliac disease in an open and inclusive way.

And finally, for everyone who has a child, or adult in their lives with coeliac disease, I have created a Facebook group where anyone can ask questions, ask for help with label reading, or just seek support after a hard day because while childhood coeliac disease will always be emotional, it shouldn’t be scary and isolating.